Steve Dezember was told he’d live up to five years after his ALS diagnosis, but eight years on he’s still defying expectations.
Steve Dezember was only 28 when he was diagnosed with Amyotrophic Lateral Sclerosis (ALS). At that time, his girlfriend, Hope Cross, then 26, vowed to stick by him despite doctors anticipating a life expectancy of two to five difficult years. However, Steve defied expectations and, eight years later, hopes he’ll still be here when a cure is found.
Steve and Hope had only been dating for four months before he was diagnosed with ALS in August 2011. With the doctors’ prognosis being only a few years to live, it’s perhaps understandable that Steve wanted to make the most of them, and he wanted Hope by his side.
So two days after Steve’s ALS diagnosis, he proposed to Hope. Of course, their time would be short and there would be challenges ahead as his body started to give up on him. Steve explained that he fully understood if she wouldn’t be able to cope with the challenges that faced them. But Hope knew exactly what she wanted.
Thankfully, Hope wasn’t about to leave the man that she loved. And in October 2011 they walked down the aisle together as husband and wife. Naturally, the newlyweds were determined to make the most of whatever life they had left together, but they weren’t prepared for how quickly Steve’s body would fail.
Despite concerns over Steve’s health, the young couple muddled through, with Hope learning how to care for him as he deteriorated. But the latter confounded doctors by surpassing the life expectancy they ascribed him. And in 2019, eight years on from his ALS diagnosis, he hopes he will still be around when scientists find a cure.
Hope and Steve’s love story started in April 2011, though they had first met four years earlier when the former had worked as a therapist for drug and alcohol users. Steve had been charged with a DUI, and as part of his punishment he was assigned to sessions with Hope. So, when their paths crossed again years later, she felt somewhat awkward.
The couple are based in John’s Creek, near Atlanta, Georgia. And it’s there that Steve was out with some friends one night in 2011 when Hope walked into the room to meet up with the same group of pals. However, she soon forgot about any embarrassment she felt when the pair started chatting.
Hope told Good Housekeeping in August 2015, “… [Steve] was so charming, kind and sweet. He sat and listened to me for an hour just complaining about an ex that night. He didn’t judge me or make fun of me, like all of our friends were. An awkward night turned out to be a wonderful beginning.”
Following their evening together, Steve called Hope the next day to ask her out. As she recalled to People in August 2017, “He charmed my socks off on our first date. He had candles lit, he had Frank Sinatra playing and he cooked crab legs.” However, Steve’s chivalry wasn’t the only thing Hope noticed that night.
Hope looked on as Steve fumbled with his crab legs and saw his hands shaking when he wrestled a bottle open. But the sensation wasn’t a new one for Steve. He’d been struggling with symptoms for two years and had been misdiagnosed several times. Nevertheless, it was a sensation doctors presumed to have an answer for.
Steve had played hockey for years, resulting in numerous broken bones and damage to his nerves. For their part, doctors had dismissed his trembling as symptoms of his injuries, including having a metal plate inserted into his foot. All of Steve’s symptoms had a convenient diagnosis, but that all changed when he started inexplicably falling over.
Then after a series of tests in August 2011, Steve was diagnosed with ALS, also known as Lou Gehrig’s disease. The condition itself slowly attacks the patient’s nerve cells in the spine and brain. Symptoms manifest as muscle spasms or stiffness, causing them to shrink, and eventually patients often lose all abilities to move, talk, breathe and swallow.
As we mentioned earlier, Steve and Hope had only been dating for four months when the former’s diagnosis came. Nevertheless, their relationship had progressed quickly, with Hope attending the doctor’s appointment in which Steve was given his diagnosis. But doctors had also told the then-engineering recruiter some more devastating news – they only expected him to live another two to five years.
With his prognosis, then, it’s perhaps understandable that Steve didn’t want to waste whatever time he had left. Furthermore, he wanted Hope to be a part of it, but understood if she expected more from a relationship than he was in a position to give. The young couple, then, had a lot to discuss.
“The next day [Steve] told me, ‘You don’t have to stay with me,’” Hope recalled to Good Housekeeping. “[He said], ‘You heard the doctor – it’s going to be hard. I’m going to start losing control. If you want to leave, it’s okay.’” However, Steve may have underestimated Hope and her response was one he perhaps hadn’t anticipated.
“I [told Steve], ‘I’m not going anywhere,’” Hope continued. And then, for the first time in their short relationship, marriage was discussed. However, Hope had never envisioned a future with marriage in it. It’s just something she had no desire for. But life has a funny way of turning on a dime.
Then three days after Steve’s diagnosis, the couple stopped by a spot they regularly frequented while on a walk along the Chattahoochee River. Hope had already assured Steve two days earlier that she had no intention of leaving him, despite his illness. And with this in mind, Steve had something important to ask her.
Hope told Good Housekeeping, “[Steve] said, ‘I know you said you’re always going to stay with me. If you are, will you marry me?’” And yet, despite Hope’s feelings on marriage, she accepted. Hope added, “… Surprisingly, I didn’t have any hesitation.” Reservations, too, only came from external sources concerned with how hurried it was.
“My friends and family thought I was crazy, that it was too soon,” Hope continued. After all, the couple had only been dating for four months. But, she said, “When I told them I was certain, they didn’t question it. This was real. We could face anything.” Meanwhile, they married two months later, while Steve could walk down the aisle.
“It’s pretty wild, it’s an interesting thing when you get married and you don’t know how long you’re going to get with your husband,” Hope told People. The newlyweds may have believed their eyes were wide open to what lay ahead. However, perhaps with the benefit of hindsight, Hope tells a different story.
The couple honeymooned on a Belize private island, courtesy of donations from friends. Hope told Good Housekeeping, “We really tried to get out as much as we could while we could. At the time, Steve was still walking, though I needed to help him a lot. We were both naïve and somewhat in denial. We didn’t really think the disease was going to progress that quickly.”
The day following the wedding, Steve began a blind clinical trial lasting two months, but his health began declining rapidly. The newlyweds hoped the changes were due to his medication rather than his rapidly deteriorating physical condition. Hope added, “[Steve] didn’t want to face that he would have to be in a wheelchair. That was really our hardest thing to accept. Within five months of our wedding, he was in a wheelchair full-time.”
Then in early 2012 Hope gave up her job to care for Steve full time. But they never stopped living their lives, despite Steve’s wheelchair confinement. Instead, they spent the next 18 months traveling across the U.S., going from California to New York City.
A standout memory from their travels was in April 2013 at Florida’s Wanee Music Festival. Though he was confined to a wheelchair, Steve was nevertheless able to maneuver it, to the point he was dancing to the music. Hope then picked her husband up and they danced together onstage.
However, later that month Steve’s health took a turn for the worse. As Hope described to Good Housekeeping, “When we were in Pennsylvania in April 2013 he suddenly got really sick with pneumonia. We rushed home to our hospital in Georgia, where he underwent an emergency tracheotomy. He hasn’t been able to use his voice since.”
Hope and Steve’s life then entered a period of endless visits to the hospital. The former told Good Housekeeping, “From there, it became a spiral. We’d be home for a day or two and then end up having to take him back. This went on for months. He died twice, but the hospital staff saved him. Steve slowly started to lose a lot of weight – down to 67 pounds.”
For his part, Steve had developed gastroparesis, which is when the stomach loses the ability to empty itself of food. He threw up everything Hope fed to him, and after battles with insurance companies to get Steve alternative food sources, he eventually got a feeding tube inserted. Then, by January 2014 he was on a ventilator to assist his breathing.
Regardless of the pain Steve goes through, Hope still sees the man she fell in love with. She told Good Housekeeping, “Inside, Steve is the same man. He’s sharp as a tack. And he just lets his spirit shine, despite losing his body completely. He goes out of his way to make people smile, especially me.”
In her Good Housekeeping interview, Hope then described her 30th birthday, which occurred in 2015. She said, “I just found out that [Steve] scheduled a photo shoot with clothes, hair, and makeup, in our friend’s farm with her horses. He planned that whole surprise using only his eyes – he has a communication device that he uses with his eye.”
Through a computer, Steve told People, “It’s not easy to know you’re on the path of not being able to move. It’s really a lot to deal with, but I feel rather optimistic for having the prognosis I have.” And it’s not a journey Steve and Hope have done alone, because for over two years filmmakers captured his experiences with the illness.
In 2012 the couple decided to document the progression of Steve’s ALS, thinking at first that they’d make a 15-minute informative video to educate viewers about the condition and its effects. So, they got in touch with their wedding videographer to find out what was possible. But as filming took place, the project snowballed.
As filmmakers set about documenting Steve’s life with ALS, a bigger story emerged. It was one in which Hope was equally star of the show, as the narrative of their love for one another overshadowed the story of Steve’s illness. And while Hope learned to care for her husband, she gave him the support he needed to help carry him through.
It could be described as a miracle that Steve is still here, because as we explained earlier, Hope had to witness her husband come close to death on two occasions. But it’s these battles that inspire the couple to appreciate every day even more.
The documentary, Hope For Steve, shadows the couple on a more than two-year journey of self discovery through his decline with ALS. It includes footage of him dancing at their wedding and follows his move to a wheelchair months later. It also documents hospital visits through to his reliance on a feeding tube and ventilator.
However, as sad as the film sounds, the overriding message of Hope For Steve is one of positivity. Hope told ABC News in May 2014, “I hope that people will learn as they face adversity, which they will, I hope they learn to face it head on with courage, with love, and to never give up.”
And though doctors have been pessimistic about Steve’s prognosis, Hope has tried to remain positive. She often explores ways to make her husband’s life more comfortable and researches new information on ALS. In fact, in caring for her husband full-time, the former therapist believes she has found her true purpose in life.
Hope added to Voyage ATL in 2019 that she believed herbal remedies, along with traditional medicines, played a part in helping Steve as he struggled with his ALS. By gaining an understanding of the healing properties herbs and plants offer, she has also developed her own line of medicines due in the fall of 2019. Natural materials have also inspired a passion for painting, forming the basis of the artwork she produces.
Furthermore, painting is an activity Steve can get involved in, and Hope has a crafty way of making this happen. With paint applied to its wheels, his motorized wheelchair is maneuvered over a canvas to create unique and vibrant abstract art. However, while Steve was once able to operate the wheelchair himself, things have since changed.
Steve is still with Hope today, but now he is entirely confined to his bed. Nevertheless, with his direction via computer and approving of critical eye movements, Hope and a friend are able to translate Steve’s visions onto canvas, creating unique art. The couple then sell their wares to raise money for ALS research, as well as to cover medical bills.
“It inspires me and I know a lot of other people get inspired too,” Hope explained to People. “I’m so proud of him.” And through Hope, Steve found the hope he needed to carry him through his darkest ALS struggles. He said, “I’m fighting for the cure. I’m fighting to stay alive for when that cure happens.”